15 Minutes – Benjamin’s Story

It was a wonderful pregnancy. We had waited three years for this miracle, and he was more than worth the wait.

I wanted it all; I wanted the morning sickness, the kicks in the middle of the night, the protruding belly, the tired breasts, and the ultrasounds.

At the 16-week ultrasound, they told us we were having a boy. A son! My heart soared as I imagined all that he could become. At the 20-week ultrasound, they noticed that his heart was pushed a bit leftward. Not to worry, we were told. The heart looks fine. Keep planning on this baby. But to be safe, the ultrasounds kept coming…every few weeks. Finally, at 33 weeks and 3 days, I was sent for a fetal MRI.

That Friday afternoon, the doctor called. I almost said, “What’s the good news, Dr. S?” But something stopped me. I don’t know what it was. Maybe it was his tone, maybe it was intuition. And that’s when he said, “We see what appears to be a diaphragmatic hernia. Let’s schedule a conference for Monday.”

Saturday passed, and surprisingly I didn’t Google. Sunday was a different story. I learned what we were up against and my heart broke for what my baby would have to go through. My little boy. My first. He wouldn’t be coming home with us. But still, I didn’t make plans for if he didn’t make it. That wasn’t an option. The kind of determination that only comes with maternal instincts kicked into gear, and my husband and I uprooted from Charlottesville, VA, to Philadelphia, PA, so that he could receive his care at Children’s Hospital of Philadelphia. Surely, the best of the best would mean he would survive.

We left everything behind except what we would need for the next few months. We put all of his things in his almost-finished nursery, shut the door, and left. We expected to bring him home right around Christmas – three months later.

It was there, at CHOP, that the other anomalies surfaced. His lemon-shaped head. His short long-bones. His low-set ears. His massive, right-sided diaphragmatic hernia. The doctor offered an amniocentesis, and I said no – it wouldn’t change what they could do for him. He said it absolutely can and probably would.

Between the time of the amnio and the results, he stopped growing. At 37 weeks, the doctor said he was in big trouble and we needed to get him out immediately. An induction was scheduled, and just before they started the Pitocin, another doctor came in with a piece of paper in her hand and worry in her eyes. She canceled the induction, sat down next to me, and told me that the results were not good for Benjamin.

He had an unbalanced translocation of chromosomes 4 and 7, and the extra genetic material for 7 was massive – which directly correlates to the severity. It was the cause of everything – his CDH, his abnormal growth pattern, his delayed growth, the shape of his skull, everything. It also meant that his condition was incompatible with life. They could fix the hernia, but they can’t fix chromosomes – and his body would fail, one organ after another.

We had a choice. Put him through treatments and surgeries for days, weeks, maybe months…or let him go naturally, without medical intervention. We had a choice about how our baby died. Not if, but when and how. It was the worst moment of my life, up to that point.

The induction was canceled and we were allowed to leave. We decided to wait for labor to begin spontaneously and just love him as long as he lived. There was a chance he’d pass away in utero, but an induction meant an earlier death.

We waited for a week and a half. The hospital’s social worker put us up in a hotel for the duration. Every single day began and ended with tears. We’d often ask each other if we were doing the right thing for him, to let him die like that. I treasured every kick, rubbed my belly often, and told him I was so sorry. That I loved him. That I wanted so much more for him.

On September 15, 2011, in the early morning hours, my water broke. Labor was uneventful, and would have been perfect if not for the expected outcome.

Around 9:00pm, I began pushing. At 10:01pm, he was born.

The midwife (the doctor was still getting ready) caught him and handed him to me.

He didn’t make a sound. He didn’t open his eyes. He hardly moved. My husband and I kissed him and spoke to him, counted his fingers and toes and told him how much we loved him. How beautiful he was. He truly was the most handsome baby. At 38 weeks and 2 days, he was 4 pounds, 12 ounces, and 19 inches.

Thinking of when he was alive is a struggle. I know it’s strange to think of a baby forming very logical thoughts, but it hurts to think about how he might have wondered why nobody was doing anything to help him. I just think of him saying, “I can’t breathe. Why isn’t anyone doing anything? Don’t they know I can’t breathe?”

And then, decades too soon, he was gone. He lived from 10:01pm to 10:16pm. Just 15 minutes.

Before his birth, I pictured myself begging him to hang on. But when the time came, I didn’t. I didn’t want him to be hurting for a moment longer than he had to. Letting go appeared to be effortless, and that’s the way it should have been. Still, I selfishly wanted more time – but anything less than forever wouldn’t have been enough anyway.

(I’ll try to make the rest of this quick. Didn’t mean to type such a novel.)

A month-and-a-half later, we received the karyotype analysis on my husband’s and my chromosomes. It turned out that Benjamin’s unbalanced translocation happened as a result of a balanced translocation in me. It’s sort of an invisible genetic defect; you don’t know it’s there until you have testing…or you deliver a baby with an unbalanced translocation. we became pregnant again. I didn’t know it would happen again so soon, and I think I wasn’t as ready as I thought I was. Not physically, not emotionally.

(NOTE: The below text refers to a current pregnancy. Please stop reading here if you are not ready to read about this. <3)

Around the same time, we became pregnant again. I didn’t know it would happen again so soon, and I think I wasn’t as ready as I thought I was. Not physically, not emotionally.

At 13 weeks, we had a chorionic villus sampling (CVS). This test will be a part of any future pregnancies for us. The results came back 7 days later and showed a perfectly healthy baby girl. At 20 weeks, we had a flawless mid-pregnancy ultrasound. She’s due in July, and she’s kicking right now, as I type.

She would not be here if Benjamin hadn’t passed away. He was born a bit early and I ovulated because I, obviously, was not breastfeeding.

These days, I’m really struggling with this. I will never, ever stop wishing that Benjamin was still here, but I am so thankful for Paisley. I love her so much already and it took a while for me to love her as her own person. It’s not easy to pine for a world where both of them exist, but I do.

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As a parent we assume our children will outlive us. Unfortunately this is not always the case. You did everything you could for your child but there are aspects of life that can not be controlled. I also experienced the loss of a newborn. He lived less than a day. It’s difficult to know how someone would handle a situation until they are faced with making those decisions. Parents want the best for their children but never want them to suffer needlessly. Although it may not seem possible at this time, I believe the pain of your loss will lessen with time as life moves forward. You will always have a special place in your heart for your special angel. I wish you the best & hope knowing that others share your grief helps you realize that you are not alone.

Thank you for sharing Benjamin’s story. I think it’s so brave, the choice you made. I can’t imagine having to make that. There is no good option. But I agree with what you did, even though I know it must have been more heartbreakingly difficult than I can guess.

And congratulations on your new pregnancy! I know that she in no way replaces Benjamin (and shouldn’t), but our rainbows give us such hope after such a terrible loss. Big hugs and prayers to you.

Congrats on your baby girl. Very happy to read the good news. I stumbled across this website from another website where I’m trying to get some information on CVS procedures. I have a balanced translocation as well and I passed it along to my daughter. I’m currently 9 weeks pregnant again and super worried about having an unbalanced translocation OR miscarrying due to the CVS procedure. I feel like I’m inbetween a rock and a hard place…which I am sure you understand.

What a beautiful post, thank you for sharing such a tender and sacred story. Benjamin was, and clearly is, very loved. I weep for your loss and the pain that you continue to feel over your special little man. I hope that you and your husband take comfort in your decisions since it seems to me that you did everything in your power to provide Benjamin with the best possible experience. He was fortunate to have such mindful and loving parents. I couldn’t help but think of my own sweet little Henry who passed a little over two yeas ago while reading your words. I don’t know if anyone could fully understand the conflicting emotions of finally being able to hold your blessed child and wanting to relish each and every moment but also knowing full well that he was slipping out of this world. I too felt an urgency that surprised me. The heartache is indescribable and it is something I will never forget.

Congratulations on your new addition. Your sweet Paisley will be loved that much more since she has Benjamin as her big brother!

Best of luck on your pregnancy – my thoughts and well-wishes are with you.

I came across this site while after a posting on Facebook. I can personally relate to most of your story. I just lost my Michael (born 4/6, passed on 4/7 after living for 7 hours). At my 20 week scan, the doctor diagnosed him with a left sided CDH. We were immediately referred to CHOP and had been seen there at a monthly, then weekly basis. They did my amnio there, and did not see any genetic issues, just the freak occurrence of the CDH. I spent my entire pregnancy enjoying every kick, punch and squirm. My husband would tap on my tummy while I was trying to sleep, to get Michael to kick him. We always knew there was a chance that Michael wouldn’t make it, but I lived every day preparing to bring him home and give him the most amazing life any child could ask for. I went to CHOP at 38 weeks 2 days because he wasn’t moving as much and they told me to come back the next night, and they would start induction on Friday morning. Induction didn’t work as well, and they had to do a C-section. He was a big, big boy (9lbs 2oz, 21 1/2 inches) and they rushed him to NICU right away. 7 hours later, he left us. We didn’t want to be selfish and push for him to be hooked up to machines, only to know that we would lose him anyway. I feel your pain dealing with this, and there being no real cause or information on CDH. I hope that each day is easier for you and your husband and that Paisley will be a beautiful little girl, loved so much by her parents and watched over by her Heavenly big brother.

Thank you for sharing Benjamins story, my tears won’t stop. Thank you as well for sharing your pregnancy I am so happy for you and your little girl. My son is 2 1/2 but still remembers his brother Colin. He grabs his pictures every day to kiss them and blows kisses at the ceiling while we finish night time prayers and tells him yove you brudder Coyin Angel. It warms me every time and reminds me of how special our love for our children is, no matter how short. Best wishes for you, your husband and paisley.

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